Never a Dull Moment

We have a lot to be THANKFUL for. I resolve to write one blog daily about something that made me feel thankful or blessed, in honor of a little girl named Marlie that recently passed. We have a lot happening at any given time. I need to vent, and share the good news when I can. Writing makes me feel better, & I love to write. This is in addition to my Mixed Connective Tissue Disease/ PsA blog for my kids.

Monday, January 23, 2012

When my eyes once again snapped open at 5 A.M., I had a feeling today may be tough. I was at least able to zone a bit for a while, but not really fall back to sleep. Maybe it was the sinus pressure in my head, busy pounding away, or the stress of realizing that our health insurance isn't exactly as great as it was said to be. Any which way, I had a rough time getting up today. I knew how busy the day was going to be. I managed to get myself together, get the kids up, get my son to the lab. He was amazing through the draw, despite having an hour wait because they weren't exactly sure how to order all of the vials. He had 15 vials drawn. (I thought it was 20 at first, but it was 15.) He had the nurses giggling. He's a little charmer. ;)

After my appointment I went to my church. It is a week of prayer and fasting. I spent about an hour there. I leave feeling so much better than I arrived. Church is the only place I can break down. I wish I could break down whenever I needed to, but it just doesn't work like that. I had to run to WalMart for some household things, and since I had a little time to spare I decided to go visit my parents.

Ok, so I know that things aren't always as they appear. I don't jump the gun, I don't get dramatic, I don't worry unless I have reason to. I compile facts, look at the data, try to make reasonable assumptions, then wait for someone with greater knowledge to let me know if I'm right or not. My mom had gone in for a colonoscopy last week. They sent her home saying that she had too much iron in her colon. They wanted her on Miralax twice daily to clean out her system. Apparently, they said during the scope that very little is getting by so there is a blockage. They thought that the Miralax would do it, but Mom doesn't think it's working. I am hopeful that she is wrong. She goes back next week for scope number 2. We shall see. I don't think that they can take much more of her colon without giving her a colostomy bag, but I guess we'll find out if we need to. Otherwise the parent's are doing well. Driving each other crazy, but doing so happily.

I had a doctor's appointment next. I really didn't want to go because he didn't really take me seriously before. My inflammation labs came back high, but after doing some thinking and looking back at some facts that I had forgotten, I realized that it could have been high from the sinus infection I was fighting. I also found that being low on Vitamin B can have an impact on the tests, altering results. As I suspected, that's what he said, too. We discussed my sinus headaches, which he offered to CT scan. The thing is, antibiotics over a longer period of time would likely help that, but since I'm allergic to so many, I don't want to wear out the welcome on the few that I can take. I asked him for his thoughts on Levaquin (the antibiotic) causing tendonitis, (thanks Christine!) and he said that it is possible. I asked him if it was possible for the shoulder. He said it's unlikely but there's a very small chance that it can happen. I am going to try some rotator cuff exercises and see if that helps. He still has a misinformed concept of RA, I'm pretty sure since he once again told me that it can't affect shoulders, but this time he listened. I explained that I don't want drama, I don't think it's anything big happening yet but that something is starting. He did say that I could see a rheumy if I wanted to, but I think that maybe I don't have all of the puzzle pieces together yet. I've always been really in tune with my body, and I'm very analytical because I'm so intrigued by everything medical, so I'll just keep on keeping my eye on things. Not too bad.

Wednesday, January 11, 2012

Today I am thankful for a quick nap and an early bedtime. <3 I am also thankful for having the forums available to ask questions and find answers when I need them. I like answers. I'm a lot more hung up on them than I like to admit. However, tonight I like sleep & my book more...
Good night!

Tuesday, January 10, 2012

Well, I spent the majority of the day simply exhausted. I guess that all of the worry about my health and the stress piling up again isn't helping that. I would love to just take a month off, lay low, take some "me" time and try to recoup. Instead, I have church to help ease my heavy load.

I am very thankful for my small group, for my church, for my faith, and for my relationship with Jesus. I was especially thankful tonight that Emily came with me. I was afraid that she'd be bored, but she seemed to feel at home. While it's important for everyone to have faith, I think that it's particularly important for my Emily to have faith. And on that note, our aunt sent us the best forward tonight. I will leave you with this. It is very similar to what I try to pray, though I'm not nearly that organized. I'm heading to bed. Good night!

Dear Lord, I thank You
for this day,I thank You for my being able
to see and to hear this morning.I'm
blessed because You area forgiving
God andan
understanding God.

You
have done so much for meand You
keep on blessing me.

Forgive
me this day for everythingI have done, said
or thoughtthat
was not pleasing to you.

I
ask now for Your forgiveness.Please keep me
safe

from all
danger and
harm.

Help me
to start this daywith a
new attitude and plenty of
gratitude.

Let
me make the best of each and every dayto
clear my mind so that I can hear from
You.

Please broaden my mindthat I
can accept all
things.

Let me not
whine and whimperover
things I have no control over.

And give
me the best responsewhen
I'm pushed beyond my limits..

I know that
when I can't pray,You
listen to my heart.

Continue
to use me to do Your will.Continue to bless
me that I may bea blessing
toothers.

Keep
me strong that I may help the weak...Keep me
uplifted that I mayhavewords
of encouragement for others.

I
pray for those that are lostand
can't find their way.I
pray for those that are
misjudgedand
misunderstood.

I
pray for those whodon't
know You intimately.

I
pray for those that will delete thiswithout
sharing it with others

I pray for those
that don't believe.

But I thank
You that I believethat
God changes people

andpeople
changes things.

I pray for all my
sisters and brothers.

For each
and every family memberin their
households.

I
pray for peace, love and joy in their homes;
that they are out of debtand all their needs
are met

I pray that every eye that reads
thisknows there is no problem,
circumstance,or situation greater than
God.

Every
battle is in Your hands for You to
fight.

I pray that these words be
receivedinto the hearts of every eye that
sees it

Monday, January 9, 2012

As I mentioned last week, I've known for a while that something was happening to me. For a while I thought that maybe it was RA (Rheumatoid Arthritis). I asked my doctor. He told me that RA doesn't affect joints like shoulders or elbows. I was angry that he wouldn't hear me out, and then he lied to me. I vowed to only see his nurse practitioner after that. I wrote about the next visit (from last week) here. In short, I started telling the new nurse practitioner about my weirdest symptom- my foot that likes to go numb. The foot isn't nearly as annoying as the shoulder. My shoulder has gotten so bad that I often have to use my right arm to pull my left arm down. I told her about the shooting pains that I have in my fingers and knees, bad enough to almost make me drive off of the road. (I forgot to tell her about how lately my voice has started giving out sometimes.) She listened. I pointed out that I have 2 sick kids; I don't need drama. I like to analyze. I carefully weigh things before ruling in or out. I'm not paranoid. And I don't say things for the drama. I guess that maybe doctor's aren't used to that? Nurse practitioners are better listeners.

My point? I got the phone call today that I have been waiting for.
Me: Hello?
Dr's: Hello, this is ________ from Dr. M's office. I'm calling about your blood test results. How are you feeling?
Me: Oh, getting better finally, thank you!
Dr's: Are you still pretty tired?
Me: Yes, but I'm getting used to that.
Dr's: Well, that would be because your Vitamin B is very low, and you're anemic. The doctor would like you to come in for shots every month.
Me: (Relieved) I expected that. I hope that it helps.
Dr's: That's not the only thing.
Me: (Heart stopping)
Dr's: I have your inflammatory panel here.
Me: Am I RF+? (Probably said too quickly)
Dr's: I don't see that test here. I see your ANA. That is negative.
Me: Well, that's good!
Dr's: But your inflammation is high. Very high. Your SED rate and CRP are both high. Your SED rate is 58.
Me: ...........................

This is about where everything went fuzzy. I don't remember the majority of the rest of the conversation. My mind quickly went back to when Emily was put into Shands in October 2010, the time that she was diagnosed with Dermatomyositis & Mixed Connective Tissue Disease. With the DM raging out of control, her SED rate was 39. (I could have sworn it was 79. I had told a few people that it was 79, but I just went and looked at her old labs and it was 39.) So, my inflammation is higher than Emily's was when she was the absolute most sick of her life. Obviously, the good doctor was wrong to brush me off. Clearly, something is wrong. And now that I have proven that, now HE wants to see me. He had better be into treating me like I may know something because if he gives me that old attitude, I will be finding someone else. Before I didn't care because I had his ARNP's to see. Now I may have to only see him, if he runs his practice like our pedi does. I may love his nurse practitioners, but if I have to see the main doc all the time now, we need to get along.

So, after I had some time to absorb this, I wandered over to one of my favorite sites, Labtestsonline.org. I looked the CRP back up, and the SED rate, too. Just to make sure. The SED rate normal range goes to 15. And both are used mostly for degenerative autoimmune diseases. Yes, they can be elevated for infections, too. But I don't think (given my other symptoms) that just a little sinus infection could make it that high.

So, what am I thankful for today? I am again thankful for doctors that listen, (or at least their ARNP'S!) I am thankful that this has started the ball rolling on trying to figure out exactly what the heck is wrong with me. I am (as always!) thankful for my kids who, aside from simply being completely amazing, will now help to be my support as I support them. We went shopping with the Christmas money they got today. I never had to raise my voice once. I hate shopping, dread it, usually have panic attacks shopping, but today was actually kind of nice. And I am thankful to the friend that sold me his laptop that is almost brand new. I really, really needed a laptop. I was willing to buy a new one, but I think that this one is better for me than any new one in my price range would have been.

Sunday, January 8, 2012

Quite simply, today I am thankful that I was able to hang home with the family today. Not only did I get to sleep in, which I desperately needed, but I think I may have relaxed enough to maybe start healing. Tomorrow the kids are demanding shopping. Lord help me! It may be tough to find something to be thankful for after that. Oh, how I despise shopping! Hopefully they will have fun :)

Today I am thankful to have my antibiotics kicking in. Instead of going home and napping, I was actually busy. I still feel crappy, but a much better quality of crappy. I was also VERY happy to have my voice back! Far from all of the way, but it is at least back enough so that I can talk to people. A very necessary thing at times.

As always, I am thankful for my family. I marvel daily at how amazing they all are. My son is like a little ball of cuteness and cuddle. And my girls are so nice to have around to talk to. We still have a long way to go with Emily in terms of social skills, but for now we gently remind her that most people are not rheumatologists in training and have no clue what she's talking about when she launches into her life story. I am a mixture of amused and sad by this. It's what she knows. With Zach you hear about Lego's, Transformers and Pokemon. With Gir it's Tumblr (which she has banned me from), art & her friends. With Emily it's medical conditions and trauma. That's probably not good. However, everyone she meets is in awe of how brilliant she is, so it's not all bad. I just wish that we could have her add some happier stuff into the mix. I am just so happy to be their parent. I wonder every day where I would be without our 3 little people. I am so proud of them, and so in love with them all. I am so glad that I am not like so many other people that don't enjoy or appreciate their kids. Why have kids if you can't enjoy them?

Friday, January 6, 2012

It didn't take long today before I realized that I really wasn't ready to go back to work yet, but I was kind of stuck. I figured that, given my still- ballooney- headed state, I could at least enjoy. While testing my voice on the drive, I realized that I sounded like a dying cow. Not putting together that I choked every time I tried to talk, I also attempted to sing. The sounds that have emerged from me today had me absolutely hysterical!!! I was seriously cracking up on my drive. And choking. A lot. By the time I got to work I had already started on my smints. After I quit smoking in 2001, I searched high and low for a replacement. It took several years but I finally found mints. Nothing special; I buy Starlight mints.
I lovingly refer to them as smints. I have been known to have multiple pockets and the black hole (ie my purse) stuffed full of them. When I run out I tend to panic. Like an addict. Yeah, cuz' smints are hard core. And today they saved my life. Thank you.

My smints may have helped me get through the day but I was like a whipped ballooney head when I got home. I crashed. On my bed of awesomeness. It was beautiful. Yes, I may regret this in the morning, but for right now I am in a groggy bliss. I totally needed it. I have provided many people with someone to laugh at today. Like that wasn't hard enough, I actually had to work & be functional all day. I conquered it. I worked hard for that luxury. I earned it. And those are my thanks for the day.

Of course, thank you Jesus for saving us all from our sins, & for loving us despite our many flaws. I love you, Jesus! Amen <3

About Me

I'm a mom that is crazy busy, works full-time, and has 3 kids. We have a child with Mixed Connective Tissue Disease, and one with Psoriatic Arthritis. We have a constant supply of stupid, crazy things going wrong, but for every trial or challenge is a huge blessing that is usually over-the-top awesome. I try to laugh about it all. :) We have a lot of love in our house! That's all ya' need.